Do pain, anxiety and depression influence quality of life for people with amyotrophic lateral sclerosis/motor neuron disease? A national study reconciling previous conflicting literature

Rhiannon Edge,Peter J Diggle,Carolyn A Young,Roger Mills,Alan Tennant

doi:10.1007/s00415-019-09615-3

Abstract

IntroductionThe importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. We explored the relationships between pain, depression, anxiety and QoL to reconcile the previous contrasting findings and inform future research and clinical practice.MethodsPatient-reported outcomes were obtained as part of the Trajectories of Outcomes in Neurological Conditions study. Mood and QoL scales underwent Rasch analysis. Correlation coefficients examined the strength of association between variables of interest. A bivariate regression model was developed to examine the effects of pain, depression and anxiety on joint psychological and physical QoL domains.ResultsOf 636 people with ALS, 69% reported pain, of these most had mild pain. Seven percent (7%) of participants exceeded published cutoffs for probable depression and 14% had probable anxiety. Pain, depression and anxiety all influence quality of life; depression has a significant effect on both physical and psychological domains of QoL, whereas pain affects physical QoL and anxiety psychological QoL.ConclusionsThese results show the importance of expressing quality of life in a conceptually appropriate way, as failing to take account of the multidimensional nature of QoL can result in important nuances being overlooked. Clinicians must be aware that pain, depression and anxiety all worsen QoL across their ranges, and not just when pain is severe or when anxiety or depression reach case level.

Highlights

The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent
The aim of this paper is to examine the prevalence of pain, anxiety, and depression in a large sample of people with Amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND), and examine their inter-relationships and effect on QoL, utilising a measure that recognises the multifaceted nature of QoL
Pain is common in a large, national sample of people living with ALS/MND, reported by 429/625 (68.6%)

Summary

Introduction

The importance of elucidating the relationships between pain, mood and quality of life (QoL) amongst people with amyotrophic lateral sclerosis/motor neuron disease is evident to clinicians, yet the literature is limited and inconsistent. Since QoL for people with ALS/MND is shaped by the physical manifestations of the disease, and by the psychosocial effects of living with a terminal, disabling illness, these symptoms range from physical aspects such as pain to psychological aspects such as depression and anxiety [2]. The literature on anxiety ranges from those linking anxiety with a worse QoL [19,20,21] to several reporting no correlation [2, 14, 15] These contrasting findings have not yet been explained; speculation that small sample sizes may have led to unrepresentative cohorts is refuted by variation regarding the effect of depression on QoL among studies of at least 100 patients, where again there are conflicting results finding negative [7, 10, 11] or no correlation [13]. Studies on the relation between anxiety and depression with QoL in ALS/MND using the Hospital Anxiety and Depression scale (HADS) have shown an association between anxiety and QoL [21], or depression and QoL [10], or no relation for either anxiety or depression [2, 14]

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